The Evolving Understanding of Autism: From History to the Neurodiversity Movement
Autism has long been a subject of fascination, misunderstanding, and scientific exploration. In recent decades, the way society conceptualizes autism has shifted dramatically, thanks largely to the influence of the neurodiversity movement. This movement has led to changes in how we talk about autism and how autistic people define their own identities.
Early Views on Autism
Autism was first documented in the 1940s when two researchers, Dr. Leo Kanner and Dr. Hans Asperger, independently studied children with characteristics that would today be recognized as autism. Kanner, an Austrian-American psychiatrist, published a groundbreaking paper in 1943 describing 11 children who exhibited what he called “early infantile autism.” He noted their difficulties with social interactions, intense focus on certain interests, and repetitive behaviors. Around the same time, Austrian pediatrician Asperger described a similar condition, later named Asperger’s Syndrome, in children who shared these traits but had strong language skills. These early studies established autism as a distinct diagnosis but also contributed to misconceptions, such as the belief that autism was rare and primarily affected boys.
The word "autism" comes from the Greek word "autos," meaning "self." It was first used in the early 1900s by psychiatrist Eugen Bleuler to describe symptoms of schizophrenia. Early in the 20th century, autism was often misunderstood as a form of childhood psychosis or schizophrenia. In the mid-20th century, harmful theories like Bruno Bettelheim’s "refrigerator mother" hypothesis blamed cold and unloving parenting for causing autism. Though now thoroughly debunked, this theory caused significant harm to families, placing unnecessary guilt on parents.
For much of the 20th century, autism was viewed as a disorder that needed to be fixed or cured. Many autistic children were placed in institutions, and harmful treatments were used to try to change their behaviors. Autistic voices were rarely included in discussions about autism, as parents, doctors, and teachers shaped its narrative and treatment.
By the 1980s, autism was formally recognized in diagnostic manuals like the DSM-III (Diagnostic and Statistical Manual of Mental Disorders). The condition was divided into subcategories, including autism and Asperger’s Syndrome, based on the severity of symptoms. However, this approach often created confusion and reinforced the idea of autism as a “deficit” rather than a natural variation in human neurology. Over time, perspectives on autism have evolved, with increasing recognition of the diversity within the autistic community and the importance of including autistic voices in discussions about autism.
The History of the Term "Asperger’s" and Why It Is No Longer Used
For many years, the term "Asperger’s syndrome" was used to describe a specific way that some autistic people experience the world. It was considered a separate diagnosis from autism, often applied to people who did not have significant speech or intellectual differences. However, in recent years, the medical community has stopped using this term. Instead, all autistic people are now recognized as part of the autism spectrum. But why did this change happen? Let's explore the history of "Asperger’s" and why it is no longer used today.
The Origins of the Term
The term "Asperger’s syndrome" comes from Dr. Hans Asperger, an Austrian doctor who studied children with autism-like traits in the 1940s. He described kids who had strong interests in specific topics, difficulty with social interactions, and unique ways of communicating. His work was not widely known until the 1980s, when the term "Asperger’s syndrome" became a formal diagnosis in some medical manuals.
For many people, receiving an Asperger’s diagnosis was helpful. It gave them a way to understand their differences and connect with others who had similar experiences. However, over time, problems with the term became clear.
Why "Asperger’s" Is No Longer Used
In 2013, the American Psychiatric Association removed Asperger’s syndrome from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Instead, they included it under the umbrella of Autism Spectrum Disorder (ASD). There were several reasons for this change:
Autism Is a Spectrum Researchers and autistic advocates emphasized that autism is not divided into separate categories. Every autistic person has strengths and challenges, and their needs may change over time. Having different labels for autism created confusion and made it harder for some people to access support.
Hans Asperger’s Troubling Past Historians later discovered that Hans Asperger was involved with the Nazi regime. He worked with programs that harmed disabled children, choosing which children were allowed to live or die. Many autistic people and their allies felt that continuing to use his name was harmful and inappropriate.
Moving Toward Neurodiversity-Affirming Language The neurodiversity movement promotes the idea that autism is a natural way of thinking and being, not a disorder that needs to be "fixed." Using the term "Asperger’s" often separated people into "high functioning" and "low functioning" categories, which many autistic people find inaccurate and unhelpful. Instead, recognizing autism as a spectrum allows for a more inclusive and supportive approach.
What This Means Today
Currently, all autistic individuals diagnosed using the DSM-5-TR, receive a diagnosis under autism spectrum disorder, irrespective of their support needs. Notably, many autistic individuals previously diagnosed with Asperger’s Syndrome continue to identify with the term, which is a personal choice that is respected. However, in medical and professional contexts, "Asperger’s Syndrome" is no longer used.
Embracing a More Inclusive Future
Language changes over time as we learn more and strive to create a more accepting world. Moving away from "Asperger’s" is part of a broader effort to respect and support all autistic people. By understanding this history, we can help build a future where everyone is valued for who they are.
A Paradigm Shift: The Rise of the Neurodiversity Movement
The 1990s and early 2000s saw a significant change in how autism was perceived. Autistic individuals and their allies began to advocate for a different perspective, one that celebrated neurodiversity rather than pathologizing it. The term "neurodiversity," coined by sociologist Judy Singer in the late 1990s, refers to the idea that neurological differences like autism, ADHD, and dyslexia are natural variations of the human brain rather than disorders to be cured.
The neurodiversity movement challenges the medical model of autism, which focuses on deficits and treatments, and instead promotes the social model. This perspective highlights how societal barriers, rather than neurological differences, create challenges for autistic individuals. For example, a lack of sensory-friendly environments or inclusive communication methods can exacerbate difficulties for autistic people.
The Neurodiversity Movement’s Core Principles
1. Autism as a Difference, Not a Deficit
The neurodiversity movement emphasizes that autism is a natural variation in human neurology. Autistic individuals often have unique strengths, such as heightened attention to detail, creativity, or deep focus on special interests. Instead of trying to "fix" autistic traits, the movement encourages society to value and accommodate them.
2. Advocacy for Inclusion
Neurodiversity advocates push for inclusive policies in education, employment, and healthcare. They argue that autistic individuals should have access to supports that help them thrive without pressuring them to conform to neurotypical standards. For example, rather than forcing eye contact or suppressing stimming (self-soothing behaviors), educators and employers can create environments where these behaviors are accepted.
3. Listening to Autistic Voices
One of the movement’s most important principles is centering the voices of autistic individuals. Historically, autism research and advocacy were dominated by non-autistic professionals and parents. Today, organizations like the Autistic Self Advocacy Network (ASAN) work to ensure that autistic people have a say in policies and practices that affect their lives.
Person-First vs. Identity-First Language
One major discussion in autism advocacy is the debate between person-first and identity-first language.
Person-first language: This means saying "person with autism" instead of "autistic person." The idea behind this is to emphasize that a person is more than their diagnosis. Some people believe that person-first language is more respectful because it puts the individual before the condition.
Identity-first language: This means saying "autistic person" instead of "person with autism." Many autistic self-advocates prefer identity-first language because they see autism as an important part of who they are, not something separate from them. They argue that autism is not an illness but a different way of experiencing the world.
There is no single right answer to this debate. Some autistic people prefer person-first language, while others prefer identity-first language. However, in recent years, more people in the neurodiversity movement have embraced identity-first language because it aligns with how autistic people view themselves.
Common Terms Used to Describe Autism
In addition to the person-first vs. identity-first debate, there are different terms used to describe autism. Some of the most common include:
"Person with autism" – This is an example of person-first language. It is still used by some organizations and medical professionals, but it is becoming less common in neurodiversity-affirming spaces.
"Autistic" – This is an example of identity-first language. Many autistic advocates prefer this term because it acknowledges that autism is part of who they are. Just as someone might describe themselves as artistic, athletic, or introverted, being autistic is seen as a core part of identity.
"On the spectrum" – This phrase is often used to acknowledge that autism exists on a spectrum, meaning that autistic people have a wide range of experiences, strengths, and challenges. Some autistic people are comfortable with this term, while others feel it is too vague.
Language continues to evolve, and it is important to listen to autistic individuals when choosing the words to describe autism.
Self-Diagnosis and Its Validity
Self-diagnosis has become an important and widely accepted way for many individuals to understand themselves, particularly in communities where access to formal assessments is limited due to cost, wait times, or a lack of knowledgeable professionals. Many autistic people recognize traits in themselves after learning about autism from others' experiences, reputable resources, or professional criteria. While self-diagnosis does not provide access to formal accommodations in educational or workplace settings, it is still a valid way for people to understand their neurodivergence and connect with the autistic community.
Benefits of Formal Neuropsychological Evaluation
A formal neuropsychological evaluation can provide clarity and confirmation of an autism diagnosis while also identifying any co-occurring conditions, such as ADHD, anxiety, or learning disabilities. These evaluations assess various aspects of cognitive and emotional functioning, offering a detailed understanding of an individual's strengths and challenges. A formal diagnosis can also open doors to specific services, workplace and educational accommodations, and legal protections.
However, not everyone feels the need for or has access to a professional diagnosis. Some people may fear stigma, discrimination, or dismissive professionals, making self-identification the best option for them. Both self-diagnosis and formal diagnosis are valid ways of understanding one’s autistic identity, and the best path depends on individual needs and circumstances.
Conclusion: Embracing Neurodiversity
The history of autism is a story of progress, from misunderstanding and stigma to acceptance and empowerment. The neurodiversity movement has played a crucial role in reshaping how we think about autism, highlighting the strengths and potential of autistic individuals while advocating for a more inclusive world.
As we move forward, it’s essential to continue listening to autistic voices and working together to build a society that values neurological diversity. By embracing these principles, we can create a future where everyone, regardless of how their brain works, has the opportunity to thrive.
